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PACE re-analysis and NICE guidelines

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
There are no journalists, there are agents of policy which is PR which is media.
I would argue, to paraphrase Lincoln, you can fool all of the journalists some of the time, some of the journalists all of the time, but you cannot fool all of the journalists all of the time. Independent journalism still exists (e.g. David Tuller) but its becoming more and more rare. Churnalism of poorly investigated stories, including blatant public relations pieces, is becoming increasingly common.

A similar thing is happening to doctors via HMOs and official guidelines.

One of the issues is control in the name of efficiency, but this is increasingly making medical and journalistic professions less robust. They are failing more and more.

This decline is part of the mix of reasons why newspapers are failing, its not all due to the internet. Too many people now realize they cannot trust media stories.
 

Stewart

Senior Member
Messages
291
There is one curious aspect of the NICE guidelines /PACE fiasco which I cannot understand at all. (Only one? you ask.)

One of the strategic purposes of NICE was seemingly to put a supposedly independent organisation between patient or consumer and government at a time when unpopular financial decisions were likely to be required. This would provide deniability. Any complaints would have to be addressed to NICE and ministers could merely reply "nothing to do with me".

What was the DWP thinking of when it wholly undermined the strategy and gave a direct link back to government by part funding the PACE research? This makes clear the political interest and also makes government answerable for matters which were supposedly to be left to the "arm's length" organisations. It would not have looked nearly so bad if all funding had been channelled through the independent MRC.

I think the thing you need to bear in mind is that the UK Government doesn't function as one unified organisation - it's more like a hydra, with different departments operating more or less independently of each other, often with little information (or interest) about what other departments are doing. Its not uncommon for two departments to find that they're working at cross purposes in some way. Inter-departmental co-operation can be challenging as the system encourages people (Civil Servants and to a lesser degree Ministers) to have more loyalty to their department than to the Government as a whole. Generally speaking, Government departments look out for their own interests and leave it to other departments to look after themselves.

The PACE trial came into being because departments, agencies and public bodies across government all thought it was in their own specific interests for it to come into being. All the bodies involved assumed that PACE would confirm the previous results of smaller trials into the effectiveness of CBT and GET (after all Sharpe and White were highly respected academics from august institutions who were 'experts' in the field of CFS studies) and there would be financial savings across Government once the NICE guidance came into effect and patients were making quick recoveries. You don't spend £5 million of public money on a research trial if you think there's any possibility of getting a null result.

The Department of Work and Pensions thought that a relatively small contribution to the costs of PACE would result in an exponentially greater reduction to the overall benefits bill for decades to come. The question of whether or not this arrangement undermined the intentions behind the arms-length establishment of NICE probably didn't occur to anyone at the DWP - and if it had, they would have just shrugged their shoulders and said "Not our problem - that's for the Department of Health to worry about. As long as we get what we want out of this, that's all that matters to us".
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I have realised over the last few days that most of my posts on PACE are full of wishes that somebody other than myself would do lots of difficult things about NICE guidelines, DWP, NHS, etc etc. Perhaps we should take a leaf out of the ME Action group in America's book and contact our politicians, ie write to our MP's.

Hello. :)

For anyone who has not yet seen it, there is a petition out right now to stop trials of graded exercise therapy in the UK, with both a UK petition and a global support petition here:

http://www.meaction.net/suspend-all...se-therapy-in-children-and-adults-with-mecfs/

There is an article about it here:

http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/

There is a website with more information here:

www.stopGET.org

There are many arms of this project, one of which is a letter to MPs, for which there is a template letter already created. The moment it has a home in pubic, I will provide a link. Sorry I was too wiped out to do anything but put up a link earlier.

Trish, I want to thank you for noting that we can get into that rut of waiting for someone else to do something about these issues. We are sick but there are still things that we can do. :)
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The question of whether or not this arrangement undermined the intentions behind the arms-length establishment of NICE probably didn't occur to anyone at the DWP - and if it had, they would have just shrugged their shoulders and said "Not our problem - that's for the Department of Health to worry about.

See my explanation at: http://forums.phoenixrising.me/index.php?entries/the-doggy-treat-model-of-why-it-is-so.830/

Its the silo effect, not in research, but bureaucracy. Parliament is supposed to fill the gap ... and fails.
 
Messages
2,158
Trish, I want to thank you for noting that we can get into that rut of waiting for someone else to do something about these issues. We are sick but there are still things that we can do. :)

Thanks, Jaime, you do far more than I do, but I have at least signed and shared those petitions! Thanks for the links.

I'll have a go at drafting my letter to my MP but await the template to check I haven't left anything out.
 

Stewart

Senior Member
Messages
291

I've just read the template letter. Obviously lots of people have been working very hard on this, and I don't mean to rain on anyone's parade - but it really doesn't make very much sense to ask MPs to sign the petition. The petitions website is a mechanism by which members of the public can bring issues to Parliament's attention. MPs *are* Parliament - they don't need to sign a petition if they want Parliament to discuss an issue. They have all sorts of other mechanisms they can use to raise issues. Off the top of my head - Ministerial questions, Ten Minute Rule Bills, Early Day Motions, Adjournment debates, Westminster Hall debates...

Getting people to write to their MP is a great idea - but this isn't the right thing to ask of them. It's not my campaign, so it's not my call to make, but I think this aspect could do with a little rethinking. I hope I'm not treading on anyone's toes by saying that.

Tagging @JaimeS just to make sure she sees this as well.
 
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Messages
2,158
've just read the template letter. Obviously lots of people have been working very hard on this, and I don't mean to rain on anyone's parade - but it really doesn't make very much sense to ask MPs to sign the petition. The petitions website is a mechanism by which members of the public can bring issues to Parliament's attention.

I confess I feel the same. I will however certainly raise the MAGENTA trial in my letter to my MP.

Now I've said that, I really must write that letter.

I would like to include the graph of the PACE 'improvers' drop from 60% to 20% in my letter too. I can't decide whether to wait until the data from the PACE trial has been reanalysed before writing, so I can also include the 'recovery' re-analysis.

Any suggestions anyone. Do we have any idea of time scale for when we might see the data or the analysis? Not nagging anyone, just asking...
 
I've just read the template letter. Obviously lots of people have been working very hard on this, and I don't mean to rain on anyone's parade - but it really doesn't make very much sense to ask MPs to sign the petition. The petitions website is a mechanism by which members of the public can bring issues to Parliament's attention. MPs *are* Parliament - they don't need to sign a petition if they want Parliament to discuss an issue. They have all sorts of other mechanisms they can use to raise issues. Off the top of my head - Ministerial questions, Ten Minute Rule Bills, Early Day Motions, Adjournment debates, Westminster Hall debates...

Getting people to write to their MP is a great idea - but this isn't the right thing to ask of them. It's not my campaign, so it's not my call to make, but I think this aspect could do with a little rethinking. I hope I'm not treading on anyone's toes by saying that.

Tagging @JaimeS just to make sure sees this as well.
Hmmm, I think it's more than just a request to sign the petition.

Yes, that is in there, and I don't see why we shouldn't ask them to sign it (MPs also get a vote after all and there doesn't seem to be anything stopping them signing, "Only British citizens and UK residents can create or sign a petition." seems to be the only rule that applies), but it's also raising the awareness of the details surrounding the petition - remember the petition runs for 6 months before anything happens with it - so that time period should be used to educate our MPs about the issues that concern us.

It will always be a challenge to keep something short enough so that it gets read and long enough to successfully explain enough to engage the reader in the subject. If viewed as part of an ongoing conversation with our MPs, I think this is more than adequate.
 

Stewart

Senior Member
Messages
291
Hmmm, I think it's more than just a request to sign the petition.

Yes, that is in there, and I don't see why we shouldn't ask them to sign it (MPs also get a vote after all and there doesn't seem to be anything stopping them signing, "Only British citizens and UK residents can create or sign a petition." seems to be the only rule that applies), but it's also raising the awareness of the details surrounding the petition - remember the petition runs for 6 months before anything happens with it - so that time period should be used to educate our MPs about the issues that concern us.

It will always be a challenge to keep something short enough so that it gets read and long enough to successfully explain enough to engage the reader in the subject. If viewed as part of an ongoing conversation with our MPs, I think this is more than adequate.

I do appreciate that the point of the letter isn't just asking MPs to sign the petition - I certainly don't have any objections to making them aware of the existence of the petition or educating them about the issues surrounding GET. But the specific request it makes of MPs - that they sign the petition - is the wrong one.

Any MP who signs that petition opens him or herself up to criticism and ridicule. Why? Because if they genuinely wanted Parliament to debate the issue they could take action today to ensure it happens. They could head over to the Speaker's Office and ask to be considered for a future Adjournment Debate. Or they could make an appointment to address the next meeting of the Backbench Business Committee where they could make the case for a debate on MAGENTA, GET, the problems with the PACE trial - whichever aspect they wanted to address.

The message an MP sends out by signing the petition is "I don't actually care about this issue enough to use my elected office in any way to advance this cause". You're right to say that there's nothing actually preventing an MP from signing a petition - but it would make them look like a bit of a hypocrite if that's all they did. If I were an MP I would politely decline all requests to sign petitions on the Parliamentary petitions website - on this issue or any other - and explain that this a mechanism for the general public to bring issues to the attention of Parliament, not a mechanism for Parliamentarians to bring issues to the attention of other Parliamentarians. I suspect that many actual MPs will respond in a similar way.

If people are going to go to the effort of writing to their MP they should - in my opinion - be asking more of them than just signing a petition that's open to any member of the public. But as I said in my last message, I'm not one of the organisers of this campaign so it's really not my decision to make. And as I also said in my last message, I'm genuinely not trying to put anyone's nose out of joint, so my apologies if that's how it comes across. I can see that people have been working really hard putting this campaign together - I'm only making a fuss because I'm concerned that the letter-writing aspect won't be as effective as it could be.
 
If people are going to go to the effort of writing to their MP they should - in my opinion - be asking more of them than just signing a petition that's open to any member of the public. But as I said in my last message, I'm not one of the organisers of this campaign so it's really not my decision to make. And as I also said in my last message, I'm genuinely not trying to put anyone's nose out of joint, so my apologies if that's how it comes across. I can see that people have been working really hard putting this campaign together - I'm only making a fuss because I'm concerned that the letter-writing aspect won't be as effective as it could be.
OK, fair enough. What then should they be putting in to the letters?
 
Messages
2,158
I think it's great that people have gone to the trouble to produce a perfectly good specimen letter for those who don't want to or can't manage their own.

I personally may choose to write a different letter, but we're all aiming for the same outcome, so shouldn't be telling others not to use the sample letter, but it's fine to do it differently. I'm sorry if I seemed critical questioning whether to put in the petition. There are equally valid reasons for including it.
 
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JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I've just read the template letter. Obviously lots of people have been working very hard on this, and I don't mean to rain on anyone's parade - but it really doesn't make very much sense to ask MPs to sign the petition. The petitions website is a mechanism by which members of the public can bring issues to Parliament's attention. MPs *are* Parliament - they don't need to sign a petition if they want Parliament to discuss an issue. They have all sorts of other mechanisms they can use to raise issues. Off the top of my head - Ministerial questions, Ten Minute Rule Bills, Early Day Motions, Adjournment debates, Westminster Hall debates...

Getting people to write to their MP is a great idea - but this isn't the right thing to ask of them. It's not my campaign, so it's not my call to make, but I think this aspect could do with a little rethinking. I hope I'm not treading on anyone's toes by saying that.

Tagging @JaimeS just to make sure she sees this as well.

People can (and are encouraged to) shift the letter to say anything that they like, whatever they feel will be most effective.

I do believe that asking MPs to sign is an effective strategy, especially if they tweet that they did so, as the UK petition site allows them to do. Because they are in positions of authority / power, even if they don't tweet it themselves, if they reply that they signed, the individual who spoke with them can tweet the news with the hashtag of their MP, or @ them -- showing that People In Authority believe things must be done about the issue. This has the potential to net additional signatures to get us to that 10,000 more swiftly. Or, given a strong fighting-spirit and the fates on our side, the 100,000 it takes to get a debate on the Parliament floor.

I do believe that people in government signing the petition helps bring more attention to GET trials in ME patients. I don't think I would see that as hypocritical, since a signature is a tick-box of support, whereas an MP supporting us enough to present our concerns as a petition is a pretty big deal. I'd compare it to signing a petition saying we need more funding for ME research versus donating a substantive sum of money to OMI: one is a bigger and more visible commitment.

While it is possible to ask an MP to present a petition, it is more powerful to have those 10,000 signatures to demonstrate that this is an issue of incredible importance to the public before doing so. Otherwise, I believe we are too easy to dismiss.

As we continue to cultivate relationships with MPs throughout this effort, we can and will gain champions to the cause, the same way we did and are doing in the US Congress. But that requires some groundwork. In this case, the groundwork is outreach in conjunction with a successful petition.

I think it's a great idea to ask MPs to present a petition as part of our overall strategy. And thank you for:
  • being respectful in your CC
  • offering a solution to the problem as you see it, rather than pointing out an issue and swanning away ;)
In other words, thank you very much! I am going to tag @L.A. Cooper so she can see everyone's suggestions and have a think about this.

Jaime
 
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Messages
21
Location
UK
Hey guys, thanks for this.

Yeah, some really great options on how to contact your MP here. On a personal note, I have quite a good relationship with my MP and he's stated his support for the ME community several times, helping get things off the ground etc. So it isn't an unnecessary act for me to contact him about this and ask him to sign.

Having said that, I've spoken to so many people who don't have confidence in their representative, or their MP has outwardly expressed their contempt for ME in general. Not a promising sign for working well together. So where do we go from there to build healthy relationships with our politicians?

Things like Ministerial questions, Ten Minute Rule Bills, Early Day Motions, Adjournment debates, Westminster Hall debates etc. as pointed out above are really good, and I'd definitely not thought of some of these, so it's something to work on. Hammering home the message will go in our favour eventually, so trial and error as always.

Thank you to everyone for coming up with these things. It's refreshing to have options as solutions rather than "this is a problem". I really appreciate it, and will definitely be looking into these more!

Please everyone take care of yourselves!
 
Messages
2,125
Just wondering; what do the Fibromyalgia community make of all this as CBT/GET are also first line 'treatment' for them, and there are some that believe Fibro sufferers are another subgroup of ME. ?

http://umm.edu/health/medical/reports/articles/fibromyalgia
"Many patients with fibromyalgia are treated first with medication; however, the American Pain Society Fibromyalgia Panel recommends a combined approach using cognitive-behavioral therapy, education, medication, and exercise. A combination of non-drug therapies appears to work just as well as drug therapy for improving pain, depression, and disability. This combination includes exercise, stress management, massage, and diet.

Treatments usually involve trial and error:
  • Patients may start with physical therapy, exercise, stress reduction techniques, and cognitive-behavioral therapy.
  • If these methods fail to improve symptoms, an antidepressant or muscle relaxant may be added to the treatment. Doctors usually prescribe these drugs to improve pain tolerance."
 

Stewart

Senior Member
Messages
291
@andyPR [USER=18378]@JaimeS @L.A. Cooper

Sorry for taking a couple of days to come back to this thread - but just wanted to say thanks to all three of you for engaging with my comments constructively and for your thoughtful replies. Best of luck with the campaign (I'll definitely raise the issue with my MP next time I see him) and I'd be happy to help in any way I can.

(Not that I'm trying to push myself in where I'm not needed - or possibly even wanted - but I worked in UK politics for 15 years, and I'd be happy to give advice if that would be in any way helpful).[/USER]
 
@andyPR [USER=18378]@JaimeS @L.A. Cooper

Sorry for taking a couple of days to come back to this thread - but just wanted to say thanks to all three of you for engaging with my comments constructively and for your thoughtful replies. Best of luck with the campaign (I'll definitely raise the issue with my MP next time I see him) and I'd be happy to help in any way I can.

(Not that I'm trying to push myself in where I'm not needed - or possibly even wanted - but I worked in UK politics for 15 years, and I'd be happy to give advice if that would be in any way helpful).[/USER]
I'm not actually involved in #MEAction/MillionsMissing in the UK, I'm just someone trying to encourage other people into taking action by promoting the efforts of others, but I would have thought that, having practical experience of the UK political scene and, most importantly, how it works, that you could be invaluable to @L.A. Cooper and the rest of #MEAction UK who are working hard on behalf of all of us. They'll be up to their necks with the MillionsMissing events at the moment, I hope you guys get in touch with each other perhaps afterwards.
 
Messages
2,158
HI folks, well, I've done it, written my letter to my MP. I felt like sharing it after all the effort but it's a bit long to post here, so I've put it up as a blog post. No obligation to read it, you know it all already, but it's good to get it out of my system. Now I can go to bed for the rest of the day.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@andyPR [USER=18378]@JaimeS @L.A. Cooper

Sorry for taking a couple of days to come back to this thread - but just wanted to say thanks to all three of you for engaging with my comments constructively and for your thoughtful replies. Best of luck with the campaign (I'll definitely raise the issue with my MP next time I see him) and I'd be happy to help in any way I can.

(Not that I'm trying to push myself in where I'm not needed - or possibly even wanted - but I worked in UK politics for 15 years, and I'd be happy to give advice if that would be in any way helpful).[/USER]

We are VERY happy to have your help and CC @Stewart ! Feel free to PM me if you would like to be put in touch with #MEAction Network UK more directly. :)

-J
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Also, we are starting a new hashtag for Twitter: #isigned5 and #isigned10 -- along with #stopGET -- because we believe this is going to be a literal or figurative boots-on-the-ground if we want it to be a success. It's great to sign the petition(s) yourself, but to really get this off the ground, everyone has to be willing to do a little mini-advocacy with a few friends or family members.

As always, this is only addressed to those who have the capacity. If you have serious sensory issues, or are crashed, I don't want to 'guilt' you into doing more than you can handle right now.


However, if you are capable right now, and have signed, please encourage other folks to do so. Once you get confirmations, tweet the link to the petition with the hashtag to inform others of your success.

I know it can be awkward to ask for anything. In our ME-saturated lives, we may feel we ask for a lot already from those who know and love us. However, for the sake of this generation and future generations, I will ask people who are not in the community to do this thing.

I think letting people know about your goal can help provoke change: "I am aiming to get five signatures today". I think that will convince people to help YOU rather than the broader goal which may be tough for people outside our community to understand.

This is a challenge you could take on any day of the week, though. Just be like, "I'm gonna try to get 5 signatures today" and see if you can. It doesn't have to be a one-time thing, and I think it's within most people's capacities to give it a go.

-J